What Lies Ahead.....

                Many people are wondering will I ever go into remission.  I honestly can’t say what is going to happen.  SLE affects everyone so differently and it depends on the individuals bodies how they respond to the medication as well as how severe their case is. Some live with it till the disease takes them in death; and some people’s lupus goes into an inactive stage within a few months of treatment. I have heard a lot of people with lupus saying how you have to be patient and hold on.  I’m trying to do my best and work on the patience part!   =)

              

        I am learning to be ok with whatever the outcome may be.  My lupus could go into an inactive stage anytime and could last weeks, months or years.  But to help keep it that way I have to adjust a lot of my ways of doing things.   Stress, sunlight, and simply overdoing could send me into a flare at any time.  I have already seen this happen.  I had started feeling a little better and had a little more energy and the next thing I knew I was down with a flare.  It has been almost two weeks since this flare started and hasn’t let up yet.  Again only time will tell.  Lupus is very hard because you never know what it will do next.  

                

    My doctor is quite surprised that my body didn’t respond at all to the last run of high dose IV steroids.  So already I see my body rejecting treatment, which has been a little hard.  They keep you on all these drugs to try and make you get better but when they don’t work you wonder why they still have you on them.  They are talking about starting me on a new drug to see if that helps any.  I start Physical Therapy next week so I am hoping I start seeing some relief from everything.

               

       My goal was to take a few classes this fall and finish up most of my generals, but with this flare it has set me back in finishing my incompletes. So I have decided to take the fall off and spend that time finishing my incompletes.  Not being able to do much is becoming really hard.  I was always on the go and even though I complained about having to do so much, I miss being so busy and being able to just go and do things.

                

      Another huge thing I have to overcome is something people with lupus call the “brain fog”.  Lupus affects the brain causing difficulties concentrating, talking, and even memory loss.   I also have a dysrhythmia in the left lobe of my brain which affects my right side, as well as my speech.  Some days are easier to speak and think of things than other days. I can see the item in my mind but can’t find the word or get it to come out.  When I get really tired I have to do a lot of pointing.  I am not going to let this stop me in anyway and I am going to fight the “brain fog” and still accomplish all the things I plan to do.  In some ways, I have to learn how to re – learn.  Learning new ways to study and remember things for tests and such is my new challenge.  I am willing to take this challenge full on and see where it will lead me.

               

         With all that is going on I would love to help children with learning disabilities. Share the things I have learned and am continuing to learn with children. I am anxious to see what the Lord has in store for me and how he will have me use all the things I am learning through this situation. 

So as the days and weeks drift by, I am still learning to adjust my life to what is going on and learn how to live my new life.  If I have the opportunity to work I will have to watch how much I do to avoid a flare. Every day is unknown, but I still have so much to be thankful for! It could be a lot worse. Yes, it isn’t easy and I have my hard days, but I just remind myself the Lord has a reason and plan.  I also have a wonderful support system !!!  =) 

 I am still working on a post that talks about lupus, hoping to have that up in a couple days. 

Katie 

Another Week....

        So I haven’t updated in a while as I had some unplanned things come up. It all started about a week ago with increased pain and fatigue.  I had gone to my doctor on Monday and he put me on some meds to try and get everything under control. He told me if I am not feeling any better to come in again on Thursday. So, not feeling any better, I had a friend take me into the clinic. The doctor decided it was best to put me in overnight to try high dose steroids and IV pain medications to try and get a control on what was going.  As with lupus, this is most likely a flare and sometimes all it takes is a good whack of steroids to get the body feeling better. After a night of high dose steroids and IV meds, nothing changed.  He just sent me home and to follow up on Tuesday. He was puzzled that my body didn’t respond to any of the steroids or meds.  He was nice enough to send me home so I could enjoy my birthday weekend at home.

        
       Today I saw him and he will be coordinating with my mayo doctors to try and get everything squared away.  He is really pushing to talk to the neurologist as I am beginning to have more “black outs” and as well as dealing with this headache. He doesn’t see them increasing the dose of steroids as my body didn’t respond to the treatment in the hospital.  So, I am just hoping they take me of the steroids completely as it is very destructive to the body.  The good news is, my kidneys are still doing well, which I am very thankful for!  =)

      I am still battling the pain, headache and fatigue but I am thankful to not be feeling so crummy! The doctor did set up an appointment for Physical therapy and with the lady who does acupuncture. I am hoping that will help. He also put me on a med for the headaches. He said that it doesn’t stop the current headache but will help avoid them from coming back and that medication can take up to a month to begin working.  

     The next step they were talking about was putting me on a drug known as CellCept.  It is used on patients with organ transplants. There are a lot of risks to this drug, including an increased risk of cancer. I know though, that I have to do something to try and get this lupus under control. It is very hard to know if the drug will work for me or not, as everyone’s body is so different. Some people have great results and some don’t. I am willing to try anything at this point to try and have some normalcy in my life. I am just thankful my doctor here is starting to get things going and keeping in contact with mayo and trying to avoid more trips to mayo.

       I had some friends who made my birthday so wonderful. I thought I was going to the church to a graduation party for a friend only to find a surprise party waiting for me. It was such a wonderful night and I couldn’t have asked for a better birthday gift than being with friends.  Every detail was simply perfect! I then got to spend my birthday day with my whole family and enjoy time with them, it was a perfect birthday! =)

     

 So that’s what my week has been like. I am hoping to soon post a little more about lupus and how it’s affecting me as it affects everyone so differently, and no two cases are the same.

A New Secret...

                It’s been a long couple of days as I was having such abdominal pain and leg cramps.  With lupus you have to listen to every new pain and change in your body as anything could lead to serious damage to the body.  My mom thought my pain resembled kidney pain, and of course my mother being the nurse she is, made an appointment for me to see my local doctor.  Thankfully it seems that all the pain is related to a new secret- low potassium.  It seems that one of the complications of my kidney problems is low potassium levels.  I’ve been pretty exhausted today and spent most of the day lying around and not doing much.  I was given potassium pills to try and raise potassium levels.   I have a return appointment next week to have it re-checked.

These past few days have shown me how much I have to take care and be aware of my body.   I always hesitate about going to the doctor.   What if it’s nothing and I came here for no reason?  All the “what ifs…”   I am quickly learning that no symptom and no question is too silly for the doctors.  Thankfully, I have great doctors!   Each one listens to my complaints.  I’m especially thankful for their determination to keep searching until they found out what was wrong with me. 

                Another adjustment is that I have had to give up driving for a while.  I have many friends who are willing to take me around.  The lady that took me yesterday really brightened my day.   She has scleroderma and is “in-tune” to how I’m feeling and when I’m struggling for breaths or too tired to walk. As the nurse brought the wheel chair to the room we quickly realized it was the extra – extra-large chair. As we started walking around the hospital we looked for a smaller wheel chair, we spotted one and she asked if I would like to switch. I responded back were better off with the extra wide chair then that one. We laughed as I realized that I have been in the clinic so much that I know what every wheel chair is like.  =)  I have also had the opportunity to have a young girl stay with me while her mom works.  It’s been nice to have someone in the house to talk to and do homework with.  She even has a smile when I have unplanned appointments, and understands when I am limited in what I can do because I’m having a bad day.  I am thankful for her company and her bubbly spirit.

                 One of my most difficult adjustments came today as I realized I am not able to go back to work for an unknown amount of time.  I had to tell my boss to take me off the work schedule.  It is something I have put off for several months, still having that hope of returning.  I know there is still hope but  I know it’s not fair for them to wait for me when they could hire someone else.  The boss that hired me is actually quitting, but another lady that works there will be taking her place. So it was very reassuring knowing that the lady that is taking over said she would be more than willing to hire me back if I am able to work again.  It was a really hard day, walking away from the job I loved so much- letting go and saying goodbye to another part of me. I know only time will tell on how the treatment will affect me and my body.  So now I am praying and looking at some options to work at home.  The lady that will be taking over my formers boss has had some experience with not be able to work and having to do work at home and has offered to talk to me about some of things she has experienced.  

Adjusting....

I just thought I’d share with all of you, how these past few months have affected me. I have many people asking lots of questions and not fully understanding this disease that has forever changed my life. First of all I hear a lot of people wondering and surprised that I have such a positive attitude. I’ll admit I have my days where it is very difficult to deal with, but what good is it going to do if I just lay around feeling sorry for myself. I asked the Lord to full fill his plan for my life; although I don’t know why he has planned this for my life I know he has a reason and purpose. It would be a lot easier to crawl up and just sit inside all day and do nothing but it’s not doing me and the people around me any good. The hardest adjustment is not being able to work. Seeing my mom work day after day, night after night doing her best to take care of me, I feel bad and often feel like I am the one that should be taking care of her. Every day she tells me she wouldn’t change it for the world and will do it until she can’t do it anymore.  I have no idea how I could go through all of this without her. I am very thankful the Lord gave me such a wonderful mother.  I think I will keep her!!  =)

                There is still hope for remission, it has been several months and there has been progress but I have seemed to hit a wall. I could sit and just wait for the possibility of getting into remission or accept that this is how my life is at this time and adjust. It is hard when all my friends are going places and just being able to get out and go and I have to wait for my mom or someone to take me places.  If I let all that get to me all I would be is a complete mess.  I am still able to do simple things for myself and I do all I can for myself while I can.  If I am having a good day I do more than on days when I am not feeling the greatest. But I still have to remind myself that even though I am feeling good I can’t push myself to far  or I could put myself out for several days. This has been the hardest adjustment for me, as many people know me I am always on the go.  If I am ever able to return to work I will have to watch my limits, for simply over doing it could send me into a major flare and lay me up.

                Every day is unpredictable; I never know what the day will bring until my feet hit the floor. As I slowly wake up for the day my body might be feeling great, but that moment my feet hit the floor and I start moving I can feel everything that is wrong.  One day I might be able to straighten up the house and do a little running around and then turn around the next day and do nothing but lay around.  I just take every day for what it is and make the best of it.

                The past few days have been a little harder than others. As someone said it’s hard and we have to go through the process of grieving our “old” selves and start accepting the “new” us. That seems not to only go for myself but also for the people around me. I can’t always do what I was able to do before and through this all that would have to be the hardest adjustment.

                Although I might be if you want to use the word “disabled” I don’t want this to stop me and have people catering to me because of this.  There is a lot I have yet to learn, and how I am going to deal with this disease on a daily bases. But every day I am learning new ways of dealing with it. My next biggest obstacle is college. I have tossed it back and forth and I love school and it is something I don’t want to give up. Although it will take me much longer to get to the end I know I can. One verse that sticks out to me the most is Philippians 4:13 “I can do all things through Christ which strengtheneth me.” I know no matter what is thrown at me with the help of the Lord I can overcome it. 

Katie 

This is one of my all time favorite songs.... just thought Id share it with you all! :)

Welcome!

Hello all!

 I started this blog to share with you my journey and how I deal with S.L.E on a daily basis. It is a disease that many don't fully understand. Writing was something I never enjoyed doing  but I have found writing to be an outlet to how I am feeling as well as inform people about S.L.E. I hope you will enjoy this blog as I share with you my journey.


  Katie :)